Andrew’s Story

Andrew is a member of the Education Awareness Council and represents Central Nervous System vasculitis, which he was diagnosed with in 2001 at the age of 58. During his working years, Andrew was president and co-owner of a small plastic molding company in Cleveland, Ohio. He is now retired and lives in Shaker Heights, a suburb near Cleveland.

Andrew had been an avid runner and cross-country skier with 5 and 10k races under his belt and always spent a week every year cross-country skiing with friends. During the 1999 trip he lost hearing in his left ear and was diagnosed with an autoimmune hearing loss.

During the summer of 1999, his runs became shorter and shorter and he started to have trouble completing even short training runs. He tried a long bike ride with a friend and the following day he was sore from head to toe. What troubled him most was that his workouts were not out of the ordinary but his reactions to them were.

As summer progressed, things became worse and he was eventually unable to walk around the block. Then walking around the house became difficult and he started to fall asleep quite often during the day. One afternoon in mid December, while conversing with his wife, he had trouble constructing an answer to a question and kept putting his head down on the kitchen counter to sleep. She became extremely concerned and took him to the emergency room.

There were a few visits to the emergency room at the Cleveland Clinic and fortunately, Dr. Sudhakar Sridharan from the Rheumatology Department was working the night Andrew arrived at the Cleveland Clinic Emergency Room. He was admitted to the hospital and had several tests: 8 lumbar punctures (spinal taps), a bone marrow biopsy, brain biopsy, a biopsy on a nerve in his foot, echocardiograms of blood vessels, several MRI’s of his head and other tests.

At first, the doctors thought he had Wegener’s granulomatosis. However, the more tests they ran, the less he fit into the WG mold. Andrew asked that Dr. Sridharan “head up” his team of doctors that would help make the decisions on what tests and procedures would be performed. He feels lucky to have had Dr. Sridharan as his doctor and is indebted to him for all the help and guidance he provided. Andrew was in and out of the Cleveland Clinic from December to May and even went to the Mayo Clinic for a second opinion. In the end, it was Dr. Sridharan and Dr. Leonard H. Calabrese, also at the Cleveland Clinic, who made the diagnosis of Central Nervous System vasculitis. Finally, the doctors administered Gamaglobin IV and within a week Andrew finally began to feel better. He continues to receive Gamaglobin IV every six weeks.

Andrew is especially grateful to his wife, Judy for her love and support that helped him through this entire ordeal. Even when things were at their lowest, she remained by his side to help made some difficult decisions about his medical care while working with the doctors at the Cleveland Clinic.

Prior to his diagnosis of CNS vasculitis, Andrew was diagnosed with Hashimoto’s disease, also an autoimmune condition where the thyroid becomes inflamed and often leads to an underactive thyroid. He uses a drug called Synthroid to try and control the Hashimoto’s disease and has just recently started to inject the medication intramuscularly three times a week.

Andy does not run or cross-country ski any more. He says his battery just doesn’t stay charged long enough these days. Now he uses Tai Chi, which is not only great exercise but also helps him work on his balance. He feels it is important to keep things flowing.

One of Andy’s passions these days is his woodcarving. He has made beautiful bowls and artwork from what he describes as distressed wood – wood that has an interesting grain, is rotting or has insect holes. Andy and his wife also enjoy traveling. They visited Japan last spring and recently got back from San Miguel de Allende in Mexico. This June they will be visiting Barcelona.

Andy’s advice to anyone with vasculitis is to first get one doctor to be the “quarterback”. This doctor should coordinate all tests, medications and decisions with regards to your case. Andy asked Dr. Sridharan to do this for him. Secondly, make sure you always understand what tests are being run and what they hope to find out from the results. Become familiar with the drugs you are taking and their side effects just in case you have a reaction.

Judy, Andy’s wife, suggests that you become as educated as possible and do not be afraid to ask questions or for clarification. Take responsibility for example, by learning the vocabulary and do not ever assume anything. And finally, don’t be afraid to ask for help.

Although Andy has multiple autoimmune disorders, none of his doctors have suggested that they are in some way related. He also states that to his knowledge no autoimmunity runs in his family.

During his time with the Education Awareness Council, Andrew would like to work on helping patients get quicker, more accurate diagnosis when faced with a vasculitic disease. It saddens him to think of how many patients have lost their lives because of an improper diagnosis.